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Maternity & Parenting Center

Hospital, Moving, and SUBs

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I’m sure most of you are interested in an update about my Mom, so I thought I’d lead with that. She is doing well, but we still do not have an answer about what is going on with her. I don’t think she slept particularly well last night…she called me at 8:30, 10:30, 1:30, 5:30, and 8:30. Maya woke up again for the first time at 5:00 am, but she immediately fell back to sleep until 8:30. Micah woke up right at 9, and we raced around getting the children ready. Yesterday, we had the pest control specialist kill off the spiders in the house, so today, we asked Patricia, our cleaning lady, to meet me at the house at 10:00 to dust and vacuum and get rid of the spiders and cobwebs.

Because of this appointment, I did not get to Hopkins until 1:00. The nurse did a quick interview/exam of Maya, and then gave us permission to bring Maya back to Mom’s room for the day! When I arrived, there was a note from Elise that she had been by to visit, but Mom was getting an EEG. Sorry we missed you, Elise! I was able to meet with Dr. Holdhoff right when I arrived. He said that her MRI and CT scan both looked good, and he briefly discussed sending her back to Levindale tomorrow. I explained to him that it would not be in our interest for her to go back to Levindale for 24 hours, and he readily agreed. Instead, they will be keeping Mom at Hopkins at least until Friday.

Our biggest concern is that they have no explanation for why Mom is experiencing headaches, nausea and vomiting all of the sudden. They tried increasing her steroids…but there have been no improvements. We had hoped her symptoms would improve with the antibiotics to treat her UTI, but so far we’ve not seen any improvements. They did an EEG, but we had not heard the results by the time I left today. We have one possible theory left…they put Mom on an anti-anxiety medication almost two weeks ago, and it is possible that the nausea and vomiting are just simply side effects from that medication. I am a bit nervous for them to release her home without identifying the source of her new neurological symptoms.

Lately, Maya has become the queen of SUBs…and for those of you unfamiliar with this term, it was coined by our friends, Ellen and David, and it stands for shit up the back. It is the lovely situation that occurs in all babies when they manage to poop to such extremes that it explodes out the back of their diapers and completely covers their clothing. Naturally, Maya has been so kind as to SUB every day this week, at the most inconvenient times. Yesterday, it happened while we were in the emergency room (and I was so discombobulated that I had forgotten the diaper bag at home). I had to get diapers from the pediatric ER, but it was a mess…and I had no change of clothes for Maya. Even worse…she did it a second time, as I was leaving the hospital. While I was trying to convince a nurse that she was germ-free and safe to have back in the room visiting my mom. I had to take a paper towel, put it underneath her…and drive her home with a diaper oozing poop.

Of course, she decided to SUB again today…this time, I had the diaper bag, but no change of clothes. I had to creatively rinse out the poop from her outfit…and re-dress her in wet clothing. Lovely, right?

Tomorrow is moving day…again. I was counting earlier, and I think I’ve moved over 25 times since 1991. From 1991-1998, I moved at least 2 times every year…sometimes 3. In 1999, I purchased a condo, bought some heavy furniture, and “put down roots” for 3 years. Then I sold my condo and moved home for a few months while I searched for another place to buy. A few months later, I moved into a rental unit, then bought that a year later. I actually lived in that condo from 2003 until 2008. But, in 2006, we moved some of Elliot’s things into my condo. In 2007, we moved the rest of Elliot’s things out of his house. In 2008, we moved all of our things back into Elliot’s house. In 2009, we moved all of our things from one storage unit to another. In 2010, we moved the rest of our things out of my condo and into the storage unit. And here we are, moving all of our things yet again in 2010. I think when we move back into our house after the renovation, I’d like to stay put for a couple of years.

I truly hate moving – it was so much easier when everything I owned was portable and could fit into a minivan. We are so completely unprepared for this move. We have so much stuff, and we have completely failed to organize and weed through it. Nothing has a place, and I’d guess we should throw out half of the things we have here. Naturally, we’ll just end up moving the crap yet again.

Tonight, we also finally started packing. Actually, to be fair, we had the movers come tonight and spent a few hours packing, Megan packed up all of Micah’s toys during his nap, and Elliot spent the afternoon working with Leslie (our organizer) to get his office in order for the move. I’m not sure if we really made significant progress, but we did find the keys for the house today. They were exactly where I thought they were…but hidden under something. I swear I checked underneath there about a dozen times, but I guess I must have missed them. Doesn’t it always happen that way?

Tomorrow is the first day I will not see my mom since August 20. I have seen my mom every day for the past seventy-five days. I have driven to/from Baltimore for the past seventy-two days. It is at least 80 miles roundtrip, which means that I have driven over 5,760 miles in the past 2 1/2 months. My father has made the same trek, too, although a few days we have journeyed there and/or back together. Some days, Elliot has driven us. But each and every day, we’ve gone. But tomorrow, she will spend the day in the hospital without me there to check on her…to lay eyes on her, to knock any heads, to sort out any problems. I’m sure I’ll call her a million times tomorrow to check on her…but I won’t be able to see her with my own eyes. I keep trying to figure out if I can make it up there…but I know there is no possible way to move an entire house and drive there and back.

I’m definitely overwhelmed by how much stuff we still have to pack and move. It is going to require numerous trips back and forth, and I am definitely concerned about how I am going to coordinate the packing up at the Bethesda house (to make sure that the right things are packed in an organized fashion) and to simultaneously coordinate the unpacking on the other end at the Potomac house. I am worried about getting everything moved and put away in time to give the children a normal bed time/evening, and have everything sufficiently in place for my mother for Friday. I’m so used to relying on my mother when I move…she and I have the same sensibilities about where things belong. I can trust her to pack up any room, or unpack key rooms like the kitchen, because she would set it up exactly the same way I would. There is no one else that thinks the way we do, and this is the first time I have to move without the benefit of her assistance. That alone is going to make this my most difficult move yet.

On another note, my mom has been calling here on and off since 2:00 am. The nurse on duty tonight is refusing to put her on the commode…this is so frustrating! I already called and spoke to him, and I think he is reversing his opinion. I also sent a note to the doctor and hope he will address this issue in the morning.

But beyond that, I’m a bit worried about her – she was quite strange on the phone tonight. We were talking, but there was a lot of static and noise on the phone, and her voice was very garbled and difficult to understand. The last time I had this much difficulty talking to her on the phone was this summer, before we got her diagnosis. She kept telling me that it was because her phone was in her pocket. I asked her why she was putting the phone in her pocket while we were talking, and she insisted she wasn’t. She said it was there before the call, and she had forgotten to take it out. I told her that she could not have called me with the phone in her pocket, and she started to argue with me and tell me how I never believe her and how I must think she is stupid. No…I just know that in order to dial the phone, she has to take it out, press a button to activate the phone, and talk directly into the speaker. I also know that at one point during our call, she had it up to her ear, and I am concerned that she thinks it is normal to put a phone in her pocket mid-conversation. It is like she is forgetting we are on the phone and just putting it down mid-conversation. She has been doing that over the past two days, and it is striking me as another neurological symptom.

So, hopefully tomorrow things will improve with my mother. I’m definitely concerned…I know they keep telling me that everything is fine and that the tests look great…but something isn’t quite right, and I’m concerned that they cannot seem to figure out what is wrong. I’m also worried that I will not be seeing her in person tomorrow, and I have to rely on my father to communicate specific information with me – not his strong point. My brother will be heading over tomorrow evening, and I think Diane and Joey will be visiting as well. My mother will be alone all morning (probably until 12 or so). I hope she gets a few visitors, and I hope that they keep their promise and get her out of bed tomorrow. We’ve made far too much progress in her sitting stamina for her to spend all day in bed again.

Wish us luck with things! I hope it goes smoothly, and I hope that we can have everything moved over there and unpacked in a single day. I’m so worried about getting everything ready for Mom, and I have a sneaking suspicion that the kids will be a disaster tomorrow night in the new house, so finding the time to unpack is going to be a challenge.

Jessica

Bump in the Road

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It has been quite a day…mostly filled with a lot of tears and worry. My mom has been re-admitted to Hopkins. She is okay…stable, and mostly there for observation. We think this is more of a “bump” than a setback, but it still came as a bit of a surprise.

Over the past two weeks, my Mom has been listening to Tuesdays with Morrie in audiobook format. She spends a lot of time quoting from the book, and she has repeatedly asked me to read it again. Yesterday, I started to listen to the audiobook on my drive home…but I was in tears the whole way home. I think it just hits too close to home for me right now, and I’m really not sure that I can continue to listen to it at this time. It really is a wonderful book, but I think I’m far too raw to hear this story.

As my Mom and I talk, she always brings up the book in every conversation, usually by saying “Morrie says…” and quoting from the book. We talked about how “Morrie says” that this universe is too harmonious, grand and overwhelming to be an accident. We talked about the circle of life, and a few of Morrie’s theories on the birth-death balance. I told her that one of the things that touched me was the story Mitch Albom relayed about the day Morrie got his diagnosis. I don’t recall the exact quote, but apparently, he looked outside, noticed the world going on around him and felt like yelling “why is the world still going on when it feels like my world just stopped?” I think that is exactly how I’ve felt since the day we learned my mother had a brain tumor…sometimes, I just do not understand how the world is going on around me when I feel like my world has just…stopped.

Today, Mom wanted to know if she could steal a line (with a few alterations) from him for her tombstone, or if that would be a copyright infringement. It made me laugh, but I love that the book has touched her. According to my Mom, everyone should read the book. Now that she has finished this book, I might get her Mitch Albom’s book The Five People You Meet in Heaven to see if she likes that as well. I also recently added The Alchemist to the ipod, but she seems to be having trouble concentrating on that.

Last night was a rough night. The baby woke up at 5 and my mom started calling me at 6. She was dizzy and not feeling well again. I immediately contacted Dr. Holdhoff to give him an update. My mom called a few more times over the next two hours, and Micah woke up early, too. I called my father around 8:30 to give him an update, and we started to speak to the doctor at the nursing home to work out the plan of action. We were working on getting the nursing home doctor to at least call Dr. Holdhoff to coordinate the proper tests and hear the recommended procedures.

Micah woke up early, too, and my day was off and running. My father called to say he needed to take the car to be serviced and I had to go up to Levindale since he was going to be late. I raced around getting ready and had to send Micah to preschool with Megan instead of going with him. I got in the car, stopped to vote, and headed up with Maya to Levindale. I was there before 11:00, and it turned out, my father was already there. I have to admit, I was a bit ticked that he didn’t call me to tell me he was running ahead of schedule so I could have taken Micah to preschool and come up an hour or so later.

We spoke to the doctor, and he told us he was making arrangements for Mom to go to Hopkins. Jen, Paige and Peyton came by to visit Mom, but they arrived right at the same time as transport. We made sure Mom had her lunch, the girls said a quick hello, and we all headed out.

My father, Jen and I were all a bit teary – to be frank, we were concerned that my mother was dealing with a brain bleed or significant tumor growth. My Mom was quite clear that she does not want any more surgery. Consequently, we were all worried that this might be the beginning of the end, and we kept getting all choked up. We tried to keep it in check, but not always so well. I was frustrated about what this meant for her rehab stay. I really wanted Mom to have a few more days of rehab before we brought her home. We knew that if they admitted Mom to the hospital, her time at rehab would be over. We debated packing up her things before we left so that we would not need to return later, but ultimately we decided to wait to pack her belongings.

We did have a bit of comic relief before we left…my Dad’s jeans split right down his tush!! Yes, his jeans were ripped, and his underwear was hanging out for the world to see. Luckily, one of the staffers told my father, and he was able to take his jacket and tie it around his waist for the day. For the sake of my father’s modesty, I will not share the color of his underwear (hey, Dad, note the spelling). We were hysterical!!

We arrived at Hopkins and Mom was taken to the ER. My father and I took turns in the waiting room for a while watching Maya while the other one sat with Mom. They immediately took a CT scan, ordered a platelet transfusion, and decided to admit her. The nurse took some pity on us…and got permission for us to bring Maya back into the room with Mom. While there, she dictated an email, I read her the blog and your messages, and we had a few chats. We talked about what a great visit she had yesterday with Roz and Sharon, and we laughed over Roz’ message to Mom. It was funny to listen to them talk about the huckleberries…and boy, do I miss my Grammy’s huckleberry pie! I also loved hearing all of the stories of when they lived together.

My mom and I kept reminiscing today. I have to say, I wish I had been taking notes, because we remembered a bunch of funny stories, and I remember laughing and smiling a lot while we were waiting. Perhaps my mom will be able to remind me tomorrow when I read this to her, but I think I’m just so tired that I remember the feeling, not the details. My mom also asked my Dad to bring a few of the Dr. Seuss books to the house so that she can record them for the children (thanks, Trenna, for the great idea). As we were talking about the books, my Mom turned to me and told me that we needed to write our own Dr. Seuss book about Dad. She thought that we should use the book Green Eggs and Ham for our book, and suggested it include lines like “Dad can sleep in a house, Dad can sleep with a mouse. Dad can sleep in a boat and Dad can sleep without a coat. Dad can sleep here or there, Dad can sleep most anywhere!” We then started to substitute other words…like shop…and thought the book idea just got better and better!

Before the CT scan, they warned us that CT scans are challenging to read post-surgery and radiation. Often, they look far worse because of the swelling from radiation, and they did not want us to be upset if they told us things looked worse. Luckily, we got good news about her CT scan right away…no major brain bleeds! That was a big relief – they were concerned that was the source of Mom’s problem. Even better news…Mom’s “midline shift” (the portion of her right brain that is pushed into the left side of her head due to swelling) had reduced by .6 cm – fairly significant! That is really good news because they usually expect things to be worse at this point, not better.

We were there for maybe 2 hours before they transferred her to a room. She is actually now in the Weinberg building, and will remain there for a few days. Because we have run out of insurance days for rehab, Mom will not be readmitted to a rehab after this hospital visit. We asked the hospital to make sure that they can keep Mom until Friday (since we have no way to take her home prior to Friday), and they said it would not be a problem. We asked if they expected her stay to be longer than a few days, and right now they are still anticipating that she will come home on Friday. We will need to work with everyone to get her equipment ordered…we are not sure if they ordered everything at Levindale or not, so we will need to figure that out in the morning.

Donna – if you read this, Mom was asking about you all day today. We were unable to come up to your floor to see if you were working and let you know we were at Hopkins, but she is hoping that if you are in the hospital tomorrow, you’ll find time to stop by and visit. Actually, she said she would love to see anyone from Halsted (and asked me if I should call Ed to tell him the elephant was back in town and he might be able to get his job back again).

Mom was in good spirits today. She really is fine, minus the occasional bouts of dizziness. There is a 1 nurse to 2 patient ratio on her floor, so we decided not to get an aide. She is in a large private room, and the nurses seemed fantastic. They were not concerned about handling any of her bathroom issues or the transfers, and they were very much on top of her medications. Mom says she feels safe there, so we were relieved.

Once we got to her room (around 5), I spent time with her nurse giving her information about Mom. She was quite kind, as was the doctor. Jeremy arrived around 6, and we stayed with Mom for a while longer. Dad left around 7 to drive back to Levindale to pack up her room, and Jeremy and I stayed to sort out a few things at the hospital.

Mom was actually fixated about something she kept seeing outside her window – she was very insistent that she could see a bank sign with the temperature on it, and wanted to know if anyone else could see it. We all took turns, but we kept telling Mom that she was looking at some stoplights, not a bank sign. She was quite funny, though – at one point, I was trying to figure out what she was seeing, and I said “Mom, I’m looking, but I just don’t see it.” “Did you look to the left?” she asked. “I’m looking left…oh, you are snarky, aren’t you? Very funny, Mom.” Yes, it dawned on me that Mom was teasing me because we always ask her if she is looking left when she is having trouble seeing something. When I turned to look at her, she had a big grin on her face and her eyes were dancing at me.

It was 7:45 when we left to come home. It was a very long day, but I think my mom is in great hands again. I hope that things stay on track and we are able to move on Thursday and bring her home on Friday. I made a bunch of phone calls tonight to give everyone updates. Mom called a few times to tell me that she is doing well and that they already took her for her MRI. It is now 12:15, both children are asleep, and I think things are okay with Mom for right now. I hope we have an uneventful evening.

Date Night

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More craziness here! I’m going to try to keep it short, mostly because it is 6:00 am and the baby has been up on and off all night, and I have no idea how long I have before she wakes again.

The kids woke up at their usual time. While Megan took Micah to his Kidville class, I went with Elliot and Maya to meet my father at the rental house. We needed to take some measurements and make note of some things around the house to plan for the move. While we were there, Mom called us to say that she had thrown up again. Naturally, I was concerned, and I told Mom I’d call the medical oncologist at Hopkins.

We got the necessary measurements…but I noticed a small problem. Spiders. LOTS of spiders. EVERYWHERE. I’m very allergic to spider bites (as is Micah), so the spider problem definitely did not sit well with me. Luckily, one of my parents’ neighbors is a pest control specialist…I grew up with his younger sister, and we’ve known them for many years. I called Trey, and he’ll be by to take care of those spiders in time for our move.

After our home inspection, I dropped Elliot off and headed up to Levindale. When I arrived, Roz and Jay and Sharon were already there, visiting my mother. She was looking great – definitely in good spirits, and no signs of any nausea. We sat and talked with our company for a bit, and then my father arrived. A little while later, everyone had to leave us, so we returned Mom to her room for lunch. Once again, Mom wasn’t feeling very well. I sent an email to Dr. Holdhoff, and luckily he called me back a few minutes later. He was concerned about the nausea, but said it was not presenting as a neurological issue. He did say he wanted to get another MRI if it continued.

Later that afternoon, Mom informed me that she was dizzy when she leaned her head back, and that was causing the nausea. I sent a follow-up note to Dr. Holdhoff, and we told the doctor at the nursing home. He informed us that Mom has a UTI, but he was concerned about the dizziness. I think he is requesting a scan for her in the morning…but I’m concerned that he isn’t going to understand what he is looking at with her brain cancer. He said he wanted to know if there is a “midline shift” – uh, yeah, that is definitely what he’ll find, since she has had a “midline shift” since the initially diagnosis and admittance to Suburban Hospital back in August. In fact, it had gotten much worse, and we were told we were unlikely to see signs of improvement for a few months because of the radiation swelling. I also think that a regular CT scan is pointless – he would need to order a CT scan with contrast to see anything useful at this point because of the cancer/surgery/radiation. I sent another note to Dr. Holdhoff asking if he wants to recommend a particular type of scan that could be done at Sinai instead of Hopkins, but we’ll see.

The rest of the afternoon was uneventful. We stayed with Mom and she was feeling fine. At 2:00 she went downstairs to finish her therapy. I did our daily facial cleaning and lotioning routine, and Mom told me that she thinks everyone tells her she looks so good because her skin is in good shape now. It made me smile, knowing that she thinks our ritual is helping her.

I left around 4:30 with Dad. On our way out, we ran into Diane and Joey and their friend Arlene, who were on their way in to visit Mom. I was glad that Mom would be having more company today. I made it home around 5:30 to spend time with Micah. Elliot and I had a surprise for tonight…we were going out to dinner and a massage! My friends Heather and Brad decided to come over and babysit the kids to give us some time out. Unfortunately, Elliot never made the appointments for the massages, so massage and dinner became just dinner.

We went to a new place in Bethesda called Vapiano. It was very good, and kind of interesting. It was Italian food (pasta, salads, paninis, pizza), but it was based on the German market concept. There are tables all over, and there are food stations. You have to order food from each of the stations, and they stamp your card for every thing you order. When you are all finished eating, you just pay the bill.

The food was delicious…but we had a terrible time. The phones were ringing off the hook – I was talking to the mover and to Trey (pest control) and to the organizer, Leslie. I realized that Elliot had not made a number of the arrangements for the house that I had asked him to take care of, so Elliot and I were fighting tonight. We are both so overwhelmed by everything we have to do in the next few days and just cannot seem to figure out where to begin. The house is a mess, I’m only home a few hours a day, and we are both pretty stressed about making the move happen. We are hoping that between the organizer and the mover coming the next few days, they can just figure it out and make it happen. If not…I guess all we really need moved is the furniture, our clothing, the kids toys, and the other big things. We can always finish moving the smaller stuff later.

Our first night out in over 4 months, and all we could do was fight. We are both under a lot of stress from everything going on, but I get so frustrated that he delays making appointments for important things, and then he seems surprised that they do not hold time in their schedules for him. I was so angry about everything…the move, the fighting, the canceled massages…that I left the restaurant early and went home. It was 8:45, and I could just tell that the kids were a mess and needed me to get back. I arrived home at 9:00, and walked into the house to find Maya screaming her head off and Micah wide awake and watching tv (I had told Heather and Brad to just turn on the tv if he fought them about bedtime and we’d take care of it when we got home).

Apparently, Micah was GREAT when we left – no crying or anything. After playing for a bit, he went up to bed, he brushed his teeth and took his medicine, he got into his pajamas…but he wouldn’t let them read him a book or put him in the crib. He started to call for his Daddy instead. When the crying started, they brought him back downstairs for a little Word World.

Maya, however, melted down shortly after we left. Poor Maya just did not want to stop crying. She was tired, cranky, and all she wanted was me. Well, to be more precise, all she wanted was to nurse. She was not interested in the bottle or anyone else for that matter. When I walked through the door, I realized that Micah was just fine, so I quickly swaddled Maya up tight and nursed her to sleep. Micah sat next to me and cuddled close while I put Maya to sleep. She was so worked up that she did that temper-tantrum snivel/hiccup in her sleep!

Elliot arrived home a little while later and put Micah to sleep. Mom called in the middle of all of this to say she was awake, feeling fine, and just waiting for her pills. She said she was nervous that she might throw up again. I told her to call if there were any issues, and I haven’t heard from her all night.

Heather and Brad left to get home to their dog. Heather and Brad were so kind to come and babysit…but sometimes I feel like taking time off is worse than just doing it myself. I spent the time away stressed about everything going on and wondering how much the children were melting down. I came home to a very upset baby and a wide-awake toddler, and trying to get them to sleep was harder. We are definitely going to need to work on having other people put Maya to bed so that nights out are easier.

At four months with Micah, he was regularly taking bottles and his Grammy put him to sleep at least 1 night every week. Because of Maya’s resistance to the bottle and everything else going on, I’ve been putting her to sleep myself every night, so she really doesn’t do well with anyone else yet.

Maya was very uncooperative even after Heather and Brad left – she stayed awake until after 11:00 pm (mostly smiling at me and laughing at the fact that she wouldn’t fall asleep). Elliot and I tried to talk through things…but we were both upset and kept waking Maya, so we tabled our discussion. I finally got Maya to fall asleep, and then I crashed. Elliot took Maya upstairs around 1:00 or so and he crashed.

Unfortunately, Maya woke up again at 5:00, and it took me another hour to get her back to sleep. Rough night here. I really hope that she stays asleep for a few more hours. I’m going to try and get some sleep – we have another long day ahead.

Three more days until Mom comes home.

Happy Halloween!

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I love Halloween! I love the costumes, and parties, and trick-or-treating, and I just love how everyone smiles at cute little kids all dressed up and excited. As a child, I remember getting our costumes ready every year. My mom always had dad remove the screen from the top half of the screen door. She would lock the screen door, and stand there and hand out candy to the kids through the empty screen door portion. I think she did it that way to keep the dog inside, but I often remember her hanging out at the door all night, chatting with the parents and passing out candy.

Pumpkin carving was also a big deal at our house. Actually, the trip tot he pumpkin patch was the bigger deal. Every year, Mom, Dad, Jeremy and I would drive out to Butler’s Orchard. I remember how far out it seemed then – the roads were bumpy and gravelly, and I remember Jeremy and I bouncing around all over the way back of the wagon on our way out to the farm. We would take a hayride out to the pumpkin patch and pick our own pumpkin (they’ve now turned it into a full festival with a petting zoo, face painting, rides, and more). I also remember that my mom had to institute a rule…we could pick any pumpkin we wanted, but we had to be able to carry it back. That rule was for Jeremy – he liked these enormous pumpkins, and my mom didn’t want to be stuck carrying or paying for a 50 lb pumpkin.

Jeremy always grabbed the biggest pumpkin he could find. I liked to find the perfect shape, with few markings on the outside. I liked the perfect pumpkins…clean, rounded, slightly elongated. I would imagine a nice cheery jack-o-lantern face on it, and tried to find the happy pumpkins.

My father would have us draw our jack-o-lantern faces on a sheet of paper (and in later years directly on the pumpkin). He would open up the tops, and Mom would scrape out the insides and collect the seeds. I’d watch her stand there for hours as she emptied out the seeds, then sorted through the muck to pull out all the seeds. She would spread the soaking wet seeds across the counter top on paper towels to let them dry. Once dried, she would transfer them to a cookie sheet and bake them up in the oven – lightly salting them afterwards. We’d spend the next day or two munching on pumpkin seeds.

While Mom dealt with the pumpkin seeds, Dad would carve our pumpkins. He was very precise. He always got Jeremy’s mean pumpkin face *just* right, and he’d make a lovely happy face for me. He’d carefully transfer our designs onto our pumpkins, put a candle inside, and display the pumpkins for the world to see. I loved those times – I really only remember a lot of happiness.

Halloween was often cold here. We’d buy our costumes, and we never knew if we would need to layer heavy sweaters and jeans underneath. Some years, Mom would suggest we would dress up in something easy, like a bum (flannel shirt, ripped jeans, hobo sack, and she’d burn a cork and rub the black on our faces). As children, I remember Jeremy always going as a super hero. I know I went as Wonder Woman a few times, and Raggedy Ann, too. I also remember Rayna being afraid of masks…she’d come over, see us put on our costumes…and start screaming. We’d take off our masks, show her it was us, and she’d smile and say “I know.” But, masks on again…not so happy. I’m still not sure how Arleen managed to get her trick or treating – Jeremy might have had to take off the mask! I do remember one year dressing as a witch (well, several years) and at least one of the years I was on crutches. I remember Dad decorating my crutches to look like broomsticks. It was a cold winter…mom had dressed me in jeans and a navy blue turtle neck and sweater to wear under my cape. As I hobbled around on the crutches, the nose started to fall off…then the hat…then I tripped over the cape. One by one, I removed the items and handed them to Dad. By the end, I was just in my sweater, and everyone thought I had dressed as an invalid for Halloween.

This year, I had planned to take the kids (well, Micah) to the pumpkin patch for his hayride and pumpkin experience. With everything going on, we never made it there. Instead, Elliot just picked two pumpkins up at the store. I was kind of sad looking at them – pumpkins should come from Butler’s not Giant. I noticed that the pumpkins had no stems…Mom NEVER would have let us get a pumpkin without a long stem – too hard to get the top off!

I did, however, get the costume thing right. We dressed Micah up in an adorable fuzzy Elmo costume – he LOVED it. We also had a pumpkin outfit to put on Maya. I was a little sad that Mom wasn’t getting to enjoy Halloween with us…so I decided to bring a little Halloween to Mom.

Last night was a really rough night for us…Micah wouldn’t go back to sleep when he woke up at 2:30. He was intermittently crying or clinging for the rest of the night. At 4:00 am, his cries managed to wake the baby, too, and I was NOT a happy camper. At 5:00, I brought both children into bed, turned on Sesame Street, and nursed Maya to sleep. At 6:00 am, I took Micah back to this room and he went right to sleep. Maya was easily transferred to the crib. Maya woke up again at 8, but Micah slept until 10:30. We got up, fed Micah, and got both children ready for Halloween.

We arrived at Levindale around 12:30. We showed Mom the kids in costume and took photos.







Dad was unable to come today – he had a show for his stationery business, and was there all afternoon. On our way out, Mom had requested a burger for dinner. We decided that Elliot would run out later and get her one.
We sat with Mom and the kids for a few hours, and around 2:00, Gail and Steven arrived – with another corned beef sandwich and some cookies for Mom. We had a wonderful visit with them in the lobby area. We all chatted, Micah ran around in his costume – it was a good day.







I took Mom back to the room to do our cleaning and lotioning ritual while Elliot ran out to the restaurant to get Mom a hamburger. Gail spent some time chasing Micah and watching the baby…it gave me a chance to sit with Mom alone for a few minutes.

I had hoped to leave by 3:00, but naturally it was almost 3:45 before we got in the car. On our way out, we ran into Sheila and Les, who were just arriving for a visit on their way back from New York. I actually didn’t get to speak to my mom last night, so I have no idea about their visit. I know that she was also expecting a few more friends…Roz and Jay, Suzette and Joel, and I think Sharon and Eddie were coming by again, too.

We raced back at 3:45 to get the kids ready for trick-or-treating. We tried to feed Micah dinner (I don’t think that child ate anything yesterday), and we put Maya back in the pumpkin costume. Dad came over to see the kids all dressed up and join us.


We sat down to quickly carve pumpkins (I had drawn simple faces on them in the morning), and I had tried to quickly carve the top out. Dad is much more skilled…he took off the tops, and I emptied the seeds. I only had a chance to roughly carve one of the two pumpkins, but it was fun. Micah was fascinated with the pumpkins, and we were able to light them up and set them outside.
I don’t think Micah fully grasped the concept of Halloween. We went to a party, and he did not seem to really notice the costumes. He did, however, notice the slide. He ran around the yard and played on the slide, and generally had a good time.



We left to start trick or treating just before 6. Getting Micah to walk up to doors and say “trick or treat” was a challenge. He did love grabbing the candy and dumping it in his bag. Unfortunately, he cried every time we left a house.









By the time we hit the 8th house, I’d had enough. Dad had taken Maya back already and was standing there handing out candy when I arrived back home, so I joined him. Elliot continued on for another hour and a half with Micah, but eventually transferred him to a stroller.
Dad left around 7:30 and headed home. The kids played a bit longer. We had to fight Micah to take off his Elmo costume, but they had a great time. Dad said he spoke to Mom, and that she was thrilled to see the kids in their costumes. All-in-all, a great evening. So far, both kids have been asleep all night. Maya was a bit of a challenge to get to sleep, but she finally crashed around 10.

We bring Mom home in four more days!

Visit from Stu

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I’m going to try and keep it simple today – I just have so much packing and planning to do. The kids slept in fairly late…which was especially nice because I was up all night.

As I was getting ready, I asked Elliot to help me find the ipod. Micah started yelling “Mommy, ipod” and he reached up to the counter and grabbed the ipod. Yes, you know you’ve allowed your child too much access to technology when “ipod” is one of the few words he can pronounce perfectly.

I met my friend Heather for breakfast at the Original Pancake House at 10 (it is one of our favorite restaurants, and we love to order chocolate crepes and strawberry crepes and share them…it has been our tradition for many years now). My father showed up just before we were seated…he was kind enough to drive down and bring me my cell phone!

After brunch with Heather, Maya and I drove up to Levindale. It was an easy ride, and we arrived right around 12:30. Jeremy, Paige, Peyton, Lorin, and Stu (who was in town visiting from California) were already with Mom. We stayed in her room for a few minutes, and then we relocated to the cafe where we had more room to sit and chat. As usual, Lorin brought another delicious smoothie for my mother…and the girls ended up drinking most of it. A resounding hit!

The girls ran around, played with Maya, and had a fantastic time with Uncle Stu. It was Stu’s first time meeting Maya…and I would say she did the requisite flirting.





I got a text from Elliot – he had taken Micah down to the Rally to Restore Sanity, and he thought a few of the signs were funny. He said it was unbelievably crowded – more so than almost any other event he had ever attended before on the mall.

Dad showed up while we were in the cafe, and we spent some time together. Jeremy and the girls, Lorin and Stu all left by 3, and my father and I returned Mom to her room. My mom showed me a cute little mug that Sharon and Eddie brought over this morning – thank you! It has a great photo of mom from her birthday party, and it says Happy 65th on it.

Dad left a little while later, and I hung around to do our facial cleaning routine, nurse Maya, and give Mom some time to play with the baby. Maya and I took off on the early side (around 4:30). We got home around 5:30, I fed Maya again, and then Elliot, Micah, Maya and I drove to the Hebrew Home for a quick visit with Della (and a chance for Stu to see Micah and Elliot). We didn’t stay very long – we were back home by 7. We watched a little tv, played a few games with Micah, and then bathed the children and put them to bed.

Good news of the day…we now have a new key for our rental house. Tomorrow is going to be a bit crazy…we need to get up to Mom on the early side (Dad is unable to go there tomorrow because he is working) so we can get back in time to take the kids trick or treating. If you are thinking of going to visit Mom, any time is good, but she could especially use a little extra company in the morning (before lunch) and later in the day (we’ll probably have to leave by 3). I hate leaving her alone for so long, so I’m hoping she’ll have lots of company to keep her occupied.

Mom will be home in six days.

Uh oh…it is 2:30 and Micah is screaming for Mommy. I wonder why he wakes up…bad dreams? Teething pain? Not a good night. Probably because I’m trying to post early, pump early and go to bed early. Let’s hope Elliot can get him back to sleep.

Peyton’s Birthday Dinner

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Another good day! Maya was up nursing early, but Micah stayed in bed until 8:30. We were downstairs waiting for Christin by 8:45. Micah was quite grumpy today…he started crying every time I made a move toward anything that looked remotely like an object I might need to prepare to leave (keys, my purse, shoes, etc.).

I was supposed to meet my father over at the new house so we could take some measurements. Unfortunately, we spent most of the morning searching for the keys to the new house. I am 100% certain about where I put them, and they are no longer there. I’m a creature of habit…I always put things in certain “designated” places. I do that (and refuse to let myself come up with new locations for things because I never remember those new and creative locations). So, important papers go in one spot, keys in another spot, etc. I do have 1 “dumping” ground…if something is “misplaced” it is always in my dumping ground. So, today I searched for the keys in my usual places – where I keep keys, my important papers pile and my dumping ground. Then I searched everywhere else. We took this house apart, and we cannot find the keys anywhere.

Since they are missing, it means one of several things happened. 1) Elliot took them and moved them (or thought he’d take them to the store to make copies and forgot that he stuffed them in something). 2) My father saw them and grabbed them and put them somewhere for “safe keeping” and now doesn’t even remember that we ever told him the keys were here. (Definitely a plausible scenario, except my father has only been here once since the keys arrived, and I really don’t remember showing him where they were). 3) Micah spotted them, grabbed them and started playing with them (he is obsessed with keys) and put them somewhere…possibly even the diaper pail, his new favorite toy. 4) Perhaps the landlady took them back. I noticed when cleaning that she took the wrong copy of the lease – it is possibly she snagged both my envelope and the keys at the same time. I am fairly certain I checked for the keys since she left (and saw them) but maybe I didn’t.

After we gave up looking for the keys, we had a lot to do. I decorated a cake for Peyton’s birthday, I straightened the house, I played with Micah, I nursed Maya…it was a bit crazy. Christin took Micah outside for a bit to play with bubbles, helped feed him lunch, and then we put him down for an early nap. She took care of Maya while I showered and dressed and got things ready for us to leave.

I heard that Diane and Joey were visiting my mom today. I’m sorry I missed them! It was too hard for us to figure out how to get everyone up to Levindale today early and make it through to dinner, so we just decided to drive up after Micah’s nap.

Surprisingly, we made it out the door on time at 2:30. Elliot asked to detour by Red Cross to pick up his new cell phone. I had no idea that the little detour would end up making our trip 1 1/2 hours long! We did not arrive at Levindale until 4:00. I ran upstairs, helped my mom finish getting ready, and we headed out for dinner. We were downstairs loading her into the van around 4:20, and we arrived at the restaurant around 4:50.

We had to wait for a few minutes while they set up the tables, but we did finally get seated. Jen and the girls arrived right on time, and Jeremy arrived a short while later. Dinner was lovely! The kids, of course, ate nothing, and the adults ate way too much. Mom and I shared food…we had gnocchi and eggplant parmesan, and it was very good. Dad also had eggplant, Elliot had a delicious pasta with a tomato, garlic, artichoke, spinach and tomato sauce. Jen had a cheesesteak, and to be honest, I have no idea what my brother ordered. We ordered Micah spaghetti and meatballs…and he wouldn’t even look at it. The girls had a little pasta, a little gnocchi, a little spaghetti…but mostly ate bread. Micah drank water, and then was throwing a fit. We ended up just playing some Elmo on DVD for him. I know – terrible habit. We cannot just use Elmo every time he misbehaves…but it was so much easier to keep him entertained than cut the dinner short and leave.




Around 6:15, we decided to serve the cake. Peyton had a huge grin on her face as she blew out her candle. I had made her an Ariel doll cake (with a real Ariel doll), and she was thrilled! Now, if I had only remembered to bring the doll’s pants and accompanying play toys that I left in the box at home, that would have been a good thing.

Peyton opened her presents and then it was time to say goodbye. We loaded up the things first (leftover food, diaper bags, etc.) and then we took Mom outside. It was freezing!! It took us a few minutes to get her in the van and lock everything in place (including the children). Jeremy, Jen and the girls said their goodbyes, and Mom, Dad, me, Elliot, Micah and Maya headed back to Levindale. I had Elliot just drop me, Mom and Dad at the front door and head home with the kids. Dad and I took Mom upstairs, got the nurse, and had them give Mom her medications and get her ready for bed.

Dad and I stayed with Mom for another 40 minutes. We took some time to do our “daily routine” – I get a washcloth and take some of Mom’s Albolene (a cream cleanser) to rub all over her face and then wipe it off. I then take the cream they gave us at Hopkins and rub it all over her face and head. Since we’ve been doing this routine, Mom has felt far less itchy and her skin is looking much better. I love our daily routine, and so does she. Every day, she tells me that she cannot wait until I get my hands on her.

Tonight, we talked about how this will be our new nightly routine when we go home. She said she looks forward to creating good happy routines for us to remember. I told her that I already had plenty of good happy memories of her, but that I was looking forward to creating many more.

I was impressed that Mom made it to 7:00 without so much as a yawn. I think she has been going to bed early out of boredom. Dad and I left together, and I drove him home to our house. He said he was tired and did not feel up to driving. I didn’t mind at all, and we had a nice chat in the car. We got home to two screaming children!! I went upstairs to help Elliot, and brought Maya downstairs. While my father waited, I changed Maya into her pajamas and started to nurse her.

Dad waited for Elliot to come downstairs after putting Micah to bed, and he asked him a favor then left for the night. He told me he was tired and going home. No surprise, but Dad called a little while later to tell me that I forgot my phone in his car, and he was driving back down to give it to me. I told him not to bother, that I could wait until the morning to get my phone from him. I realized Dad was in the car, and asked him where he was. Much to my surprise, he told me that instead of driving straight home, he detoured to the post office out by the College. I could have strangled him!! He kept insisting that it was “on his way” home (yeah…about 10 minutes further north than he needed to go, and then another 15 minutes home). I was so angry that he did all that extra driving on a night when he told me he was too tired to be driving very far! There was just nothing so urgent at the post office that could not wait until the morning (and I know he told me he had stopped at the post office earlier in the day, too).

Right after I “yelled” at Dad, Mom called me to tell me she was having a good night so far. It was nice to hear from her. A few minutes later, she called back to tell me that the battery on her book had died. Naturally, I told on Dad, too, and Mom was not happy he had done extra driving either. So, I called Dad back to ask him to ask if he had any more batteries at home (ours are all rechargeable, so they just do not last as long). I also made sure he knew I tattled to Mom about his driving escapades…at which point he realized he shouldn’t have been doing that driving. So, Dad, no more running stupid errands when you are exhausted!! Now, I’ve tattled to everyone, and he’ll be very unhappy when he reads this :).

Mom just called…I had to race through the house to find a phone that was charged…no such luck. I called her back, and she is doing well – up for the day and getting ready. We’ll head there around lunch time, and she has a few visitors planned.

Routines

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I’m finding it harder and harder to do this same routine everyday, especially now that radiation is done. It almost feels like the rigidity in my schedule is gone now that radiation is complete, so every day I “play” with the time I need to leave for Baltimore.

Thursday was a tough morning…Micah woke up screaming “Mommy!” around 6:00 am…just as I was starting to fall asleep. I don’t know whether he had a nightmare or if he was hurt, but he was loud and scared, and I needed to go upstairs and sit with him. After 30 minutes, I realized he was not going to fall back asleep. I decided to bring him into our room – I was hoping that sitting in the dark and cuddling with us would encourage him to sleep…but no such luck. Instead, he woke the baby up early, and Elliot eventually had to take Micah downstairs for an early breakfast.

Micah had preschool again today, and we ended up sending him with Megan. Elliot had a work function, and I planned a Kidville class with Maya (and our cousins Jodi and Layla, and our friends Ellen and Abigail). Maya and I met Jodi and Layla for an early lunch first at 11:00 to catch up, and I would have had to leave preschool a bit early to make it there on time. Since I was afraid of Micah crying and becoming inconsolable if I tried to sneak out of preschool 15 minutes early and swap with Megan, I decided it would be easier for him if Megan took him instead.

Maya had a great time at Kidville! I think she is a little young still for class to mean anything to her yet, but the singing and the toys made her smile. I think Micah was about 6 months old when I enrolled him in his first class, so perhaps next semester I’ll start Maya in a regular class. After class, Ellen had to run to pick up her son, Max, and Jodi and I stopped for a cupcake at Georgetown Cupcakes.

After class, I got in the car and headed to Levindale, but it was almost 2:30 when I finally arrived. My mother was supposed to be in therapy, but when I got there, the therapist informed me she was unable to find my Mom at 2:00 when she went upstairs. I sat with her for a bit and reviewed different equipment options, and then my parents walked through the door. I guess my father took my mother for a walk and the therapist was unable to find them. It was too late for therapy at that poing, so all went upstairs.

Mom continued to sit in her chair for a few more hours. We talked, we looked for her ipod (it went missing again yesterday, and we still can’t find it). Mom asked me to flip a glass upside down (my grandmother used to tell us that if you turn a glass upside in your cabinet when you lose something, you’ll find it), so I sent Elliot a text to flip one over. Hopefully, the glass will help us find Mom’s ipod tomorrow.

I called Jen to wish Peyton a Happy Birthday, but she was sleeping. While I was on the phone, Ben and Carrie (Jen’s brother and sister-in-law) came by to visit Mom. It was so great to see them! They stayed and chatted with Mom for about an hour, and we had a great visit. They couldn’t have come at a better time…Mom was upstairs, dressed, in her wheelchair and feeling great.

After Ben and Carrie left, we took Mom back to her room and my father headed home. I spent the afternoon trying to deal with getting her blood test results faxed over to Hopkins. Apparently, her platelets have dropped again (down to 62,000 from 110,000), which is a normal side effect of chemotherapy. I spoke to her medical oncologist, Dr. Holdhoff, and he said their goal is to keep her platelets over 50,000, so I believe we just need to watch and wait. She will need to continue getting her blood draws, and they will not be able to start her monthly oral chemotherapy until here counts recover. What concerns me more now is that my mother is also anemic again, and I’m not certain if anyone is monitoring that. It was such a severe issue a few months ago, and I’m concerned again. I gave my father a copy of the blood work, and he will be having my mother’s hematologist review the results in the morning. It may be that my mother will need another iron infusion again, too, but I hope not.

I finally left around 5:30 – a short visit for me today. I made it back just in time for our meeting with the architect. We now have 2 bids from 2 different contractors, and we need to choose. We thought we had already committed to one of the contractors, but our architect decided to solicit a second bid from our original contractor (whose price kept increasing during the planning phase). Both contractors are good, and their bids are competitive. One of them is more likely to function on time, and the other is likely to be a little less money. Both will do good work. I kind of feel obligated to one of the contractors (since we did tell him we planned to go with him and that the job was his), but we have not signed anything with either one of them yet. Either way, one of these contractors will feel screwed, and I think our architect might have handled this situation badly with both of them.

Micah was very funny tonight with our architect. He kept pointing to his shirt and talking, and the architect asked me what Micah ws saying. I listened for a minute and finally realized that Micah was saying “there is boo-boos.” Our architect had a shirt on with several snapshots of Renaissance art, and a few of the paintings had exposed women’s breasts, and Micah was just simply pointing out that the women on his shirt had “boo-boos.” I couldn’t stop laughing…Micah sure does love to identify body parts! Here are some pictures of us “hanging out” tonight:




As you can see from the naked doll in the last picture, Micah is still enjoying undressing the doll and putting her diaper in the diaper pail:



Peyton called to talk tonight…and Elliot and I had a chance to sing Happy Birthday to her (and so did Micah). No calls from Mom again…another quiet evening. I hope me teasing her about her 4:00 am calls didn’t make her worry about calling me…I miss having the phone ring all night/morning and talking to her. I somehow don’t think she would appreciate a 4:00 am call from me right now, though.
Today we will be heading back to Levindale, but probably on the late side again. We will be bringing both kids and the van, because tonight we will be our family celebration of Peyton’s birhtday! Elliot and I made her an Ariel cake (okay, tonight Elliot baked the cake and I will be decorating it in the morning), and we’ll post pictures of that tomorrow.

Mom will be home in 1 week.

Moving Time

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I think the panic over all I have to accomplish in the next nine days is starting to set in…we are moving to our “new” rental house on November 4th, and Mom is coming home on November 5. I’m excited, but have no idea how to pack everything up and get it ready for moving.

Today felt like a lazy day…Maya woke up around 8 and I crawled into bed to nurse her. Micah was still asleep, and I had some time to doze a bit. I guess I must have fallen asleep for a while, because I woke up startled at 9:12…and realized that Megan, the babysitter, must have been trapped outside. I quickly realized that the phone line to the house must not be working again…because I definitely did not hear the phone ring from Megan or my Mother. I quickly sent Elliot downstairs to let Megan in and find a phone.

Turns out, there was nothing wrong with the phone line…just several dead phones. I called my father, worried that I had not heard from my mother since early the night before. He called the nurse’s desk to check on her…and all was well. My mom called a bit later to check in, and she sounded great. She told me that she had an appointment at 1 for therapy, and we were wanted at the session.

Dad and I had been given specific assignments by Mom…she wanted chicken salad from Panera and she wanted salad and breadsticks from The Olive Garden. I guess Dad was a bit on the late side arriving with the chicken salad from Panera…my mom had already started to eat her Levindale lunch (hey, it was in front of her and she is taking steroids…the woman will eat ANYTHING the minute you set it in front of her these days!!). Apparently, she polished off her hospital meal…and then ate the chicken salad, too.

Today was Mom’s first day without radiation/chemotherapy! Unfortunately, it was kind of a rough day for Mom. I arrived at Levindale just as Mom was beginning her therapy appointment. I had hidden the salad and breadsticks to save for later, but she definitely asked about them when I arrived. We watched Mom do her exercises, I spoke to her occupational therapist about equipment options for the house, and then we watched the physical therapist demonstrate how she has been working with Mom to do the transfers. Mom has been doing most of the work with her right side recently, but still needs a lot of assistance with her right. Her physical therapist demonstrated the transfer…but Mom seemed too tired to help much. They worked on sitting up straight, but Mom couldn’t seem to lift her head straight for anything. She kept flopping over…and then out of nowhere, she became nauseated and threw up.

I was pretty surprised…she made it through 6 weeks of chemotherapy and radiation without any nausea, and then suddenly, today, she started to vomit. She threw up a couple times in therapy. She lay down, and they had her do some leg exercises before returning her to the room. She threw up two more times in the room. I started to worry we were dealing with another brain swelling episode, but Mom insisted that she did not have a headache or any other symptoms. We talked to the doctor about getting some Zofran for her…but she threw it up immediately. They gave her some composine, and had to give her the steroids via IV today. I called over to Hopkins, and ended up speaking to a fairly grumpy PA who told me to take her to the hospital.

We then had a dilemma…should we take Mom to the hospital or not? I knew that if we were dealing with a brain swelling issue, the hospital was the best place for Mom. But, if it turned out to be bad chicken salad (or the fact that she over-ate at lunch), then we would likely get to the hospital and be released. Unfortunately, we were told that we would lose the bed at Levindale if we could not be back before midnight. With only a few days of rehab left (and after everything we went through with the transfer/evaluation time), I knew that if we lost the bed at Levindale, Mom would not be able to complete her therapy. Without another 3 day hospital stay, insurance might not approve another visit back to rehab…and with only a few days left, there would not be enough time for Mom to go to a new place or wait for a new bed at Levindale and get anything useful out of rehab. I was quite torn about what to do. At this point, it was after 4:00 pm, and Mom was feeling better. We decided to wait and see if she threw up again before going to the hospital.

Mom thought it could just be from over-eating…apparently, she kept saying she was full, and Dad wanted her to eat the chicken salad he had just picked up for her. Mom’s intention was for Dad to pick up a big container of chicken salad for it to sit in the fridge and be available for her to eat over the course of several meals if she did not like the food on the tray. I guess my father did not understand this, and in his head, he was focusing on the fact that he brought her lunch for today and the nurses want her to eat 75% of her lunch before they’ll give her insulin…but all he heard was that she should eat 75% of her lunch. I guess it did not occur to him that she is not REQUIRED to eat 75% of her lunch at all, she just will not get her insulin if she doesn’t eat, and that 75% means 75% of her food tray, not 75% of everything that is presented to her!

By 6:00, Mom was feeling much better and decided to eat some dinner. Her nurse from Hopkins, Ron, finally called back (he apparently was at an appointment and missed the earlier page). We gave him an update, and he said that he thought we made the right decision. He suggested that we ask the doctor to give Mom a bag of IV fluid just to be safe. We requested it…but my guess is that they did not administer it. After talking to Ron, we decided to leave because Mom seemed fine again (and we were fairly certain she was sick from either the chicken salad or simply over-eating). We asked the staff, Mom, and her aide to call us if she got sick again, and we spoke to the floor doctor and indicated we would probably want to move her to the hospital if she got sick again.

I made it home around 7:30. We had already canceled our appointment with the architect, so my evening had freed up a bit. Micah and Elliot had gone to a Red Cross work event for Elliot, and were well-fed. Micah was rolling around on the floor when I walked in and excited to see me. We had a nice evening, and Micah was just being so cute.

Tonight, we had our mover come by to survey everything and start planning with us. He is great…and he is probably thrilled to have met me 12 years ago. In that time, he moved both of my grandmothers…twice, me seven times, and I have recommended him to a slew of friends. Dad called to check on Mom around 8 and all was well. Micah went to bed easily at 8:30 after the mover left. Maya was a bit more challenging…she was nursing and napping, but just did not want to go to her crib. We tried putting her in the swing…she woke up. We put her in the crib…she woke up. I nursed her again…and she woke up. It was after 10 again before she finally was in her crib and asleep for the night. In the middle of our bedtime struggle with Maya, Mom called me at 9:30 to tell me she was feeling well, and she called Dad around 10:30. So…I think we can blame the chicken salad (although I think Mom is blaming Dad for forcing her to over-eat).

I’m not even sure where to begin with moving this time. Everything is such a mess, and I cannot figure out how to get it all ready. I need to be sure not to move the mess – the last thing we need is boxes of crap all over the place in a new house. Some of the things will be quite easy to move, but other things…

Our current plan is to bring over some basic things on November 3rd at night…a pack ‘n play, some toys for the kids, and maybe some of the food stuff. On Thursday, November 4th, I think I’ll send the kids (or at least Micah and Megan) over there mid-morning to play, have lunch, and take a nap. We’ll spend the rest of the day moving. I’m hoping we can make the move fairly easily, without disrupting Micah’s schedule too much. On Friday, November 5th, we’ll just drive up to Levindale and bring Mom home.

Wish us luck!

Ringing the Bell!

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It was a beautiful day today, especially at 2:15 pm as the sound of bells and chimes and alarms and phones and horns rang out all over to help Mom celebrate the end of her radiation jouirney. We received posts on Facebook, emails, texts and calls of support all day long, and my mother spent most of the day grinning from ear to ear. One of my favorite texts today was this one (thanks, Emily):

Maya woke up early to nurse, but Micah slept until 8:30. We got Micah dressed and ready, and Elliot took him to preschool while I stayed behind to get organized for the day. I also made arrangements for us to move next week…but I’ll panic about that another day.

By 12:30, we had the kids dressed, fed, and ready to go. We let Megan go early today, and the four of us drove up to Hopkins to meet the family. We all arrived around the same time…Jen and the girls, Jeremy, my parents, and us. We went downstairs to the waiting area, and things were running on time. My mom looked lovely in her purple jump suit and her beautiful new hat from Donna. A few minutes later, we headed to the waiting area in back and took it over. The waiting area sits directly across from the room where my mother receives radiation.






Mark, the radiation tech, came out to get Mom and bring her into the room right on time at 1:45. All of us went back into the room to watch the set up. Jeremy snapped a few photos, the kids watched Mom get on the table and have her mask snapped down, and we got to see them position her in place. We went back to the lounge for the next few minutes while they turned on the machines.

During radiation, Micah, Paige and Peyton ran around and played together. They were very sweet together, but Peyton showed Micah how to work the water dispenser…and that is all he wanted to do after that.
Right around 2, Mom’s radiation was finished, and we were able to go back into the room as they took her off the table, returned her to the wheelchair, and wheeled her out to us. We brought her over to the bell, and got her ready to stand and ring the bell.


The bell is a long cylindrical tube that hangs from a hook. Instead of a chain, it has a mallet that you use to strike the bell. Mom kept saying it was more like a gong than a fire bell. To the right of the bell was a plaque with a beautiful poem about striking the bell:


“Your day has come to strike the bell!
Your silent heart has much to tell
and much to toll this proud new day
treatment done, you’re on your way.
Dad wanted to be the one to stand next to her and support her stand. Mom stood tall holding on to Dad, reached for the mallet, joked with Dad as she pretended to strike him by “mistake” and then she let it rip…she rang the bell again and again and again!










She was cheering, we were cheering…even Micah let out a loud “YAY!” for his Grammy. It was a wonderful moment, and we were all so proud to be there. Here are two different videos of our experience:

We had quite the audience…Mark and Debbie (the radiation techs), the entire family, Donna, Chanel, and even Dr. Kleinberg stopped by to watch! A few of our visitors showed up as Mom had just finished ringing the bell…so she grabbed the mallet and did it again.

A few minutes later, we wrapped it up and headed out.
Peyton cried and cried because she wanted to go with Grammy. She was inconsolable…she did NOT want to leave Grammy. We promised her they would be together on Friday night to celebrate her birthday. Elliot, Micah, Maya, Dad and I headed back to Levindale with Mom for a bit.
When we arrived, we all sat together in the front waiting area before Mom decided to head back to bed. Dad left for home around 4, and we stayed a bit longer. Micah sat in Grammy’s room watching his Elmo DVD, and Maya hung out snuggled in bed with her Grammy. I continued reading Mom all of your emails, posts, notes on Facebook and texts. I spent a few minutes cleaning Mom’s face with her cleanser and using the cream for her face and head to help the itching, then used a Qtip to help remove some of the dry skin from her ears. While we were wrapping up our routine, the speech therapist arrived for a session with Mom.

Mom was looking a bit tired, so we decided to leave at 4:45. We headed home (and stopped to buy a lottery ticket, too, since it seemed like such a lucky day). Another uneventful night at home, and another difficult night putting Maya to sleep. She crashed at 8, I put her in her crib at 9, she woke up again at 10:15 or so, and it took another hour before Elliot could get her back in bed. She just wants to be snuggled and hates to be put back down again!

Much to my surprise, my mother has not been calling tonight. I hope that means she has been sleeping soundly. Usually she calls around 8 or 8:30, again at 10 when they wake her for her pills, and then often sometime between 4 and 6 am, and usually again around 8 or 8:30 before she heads to therapy. So far, the phone has been silent…I hope that means she has been sound asleep and having a good night.

For Whom The Bell Tolls…It Tolls for Mom

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It is so hard for me to focus on today while I’m busy thinking about Mom’s last day of radiation. I’m excited and anxious and cannot believe we have made it so far. I’ve got 3 thoughts to share with you, a run-down of our day, and a favor, so here goes. If you read nothing else, please read my favor at the end of this post.

THOUGHT #1: It is funny – I mentioned helping Mom take off her acrylic thumb nail this weekend, but I didn’t really explain much about that. Many of you may be aware that my Mom nearly lost the top of her thumb when she was 3 years old. She got it caught in a door, and it was badly injured. They managed to reattach it, but the nail bed was permanently damaged. Her whole life, my mother’s thumb nail was never…normal. She also bit her nails, so all of her nails were fairly short. I clearly remember her thumb, and always found it fascinating. I know it used to bother my mother…I think she was never fully comfortable with her hands because of her thumb. During the winter, it used to crack and hurt her…I always remember her putting Desitin on it and keeping it covered with a bandaid. Maybe 15 years ago (I am fairly certain I was in college or law school), Mom decided to try and get acrylic nails…and see if there was anything that could be done with her thumb. My mother discovered a woman named Lan, who uses acrylic to build a nail for my mother. Ever since my mother met Lan, she has had a “real” thumb nail…unless you know what to look for, you’d never know that there is anything different about my mother’s thumb. It has been many years since I saw my mother’s thumb exposed like it has been since Sunday.

THOUGHT #2: I’ve also been thinking a lot about changes. On Sunday, my Mom and I tried to work on crocheting. It was hard to watch my mother frustrated…and unable to crochet. It was a huge change for us. She still knows how to crochet, but she really does not yet seem able to use her left hand enough to make it possible. I bought her a great contraption for holding the yarn…but my mother just isn’t able to see her left arm or make it move on command, at least not yet. I was frustrated for her – we just need to work on her lifting her left arm on command and I think she’ll be able to crochet again. We’re going to work on that skill and see what we can do.

THOUGHT #3: With only one more day left of radiation, I’ve been thinking about bells…the significance of bells, and their impact. Bells have so many different meanings…some people love the line from the old Christmas movie, It’s a Wonderful Life, that every time a bell rings, an angel earns his/her wings. Others think of bells as a call to action, or a warning or an alert. It is finally time for Mom to ring that bell, signifying the end of her radiation and chemotherapy. For us, a bell will now mean a victory…a small victory, but a victory nonetheless. My mother has made it through the past 2 months of surgery, recovery, radiation and chemotherapy. We’ll meet at the hospital – all of us. Mom, Dad, Me, Elliot, Micah, Maya, Jeremy, Jen, Paige and Peyton will all be there to support Mom. We’ll wait with her, hope things run on time, and at the end of her appointment, we’ll watch as she proudly rings that fire bell! I’m so proud of all she has been through to reach this point…a day we were not certain we’d actually get to see.

THE RUN-DOWN: So, a run-down of our day today before I ask a favor from all of you.

Mom was busy calling all night last night…4:00 am, 6:30, again around 8:30…she was up and felt like chatting. She pointed out that I’m usually awake and I told her to call any time, so she does. It makes me laugh…and it reminds me of the times in college when I didn’t hesitate to pick up the phone and call HER at 3:00 am because I wanted to talk.

Maya was up around 8:15 to nurse and snuggle, but we did not get up and going until Megan arrived at 9. We had to hurry and get ready and out the door because Micah had class at 10 and Maya had her 4 month doctor’s appointment! I cannot believe that Maya is 4 months old already. She weighed in today at 12 pounds, exactly, and she was 24 inches long. She was in the 25th percentile for height and weight, and is doing great. She showed off her skills, she got 3 vaccinations (2 shots and an oral vaccine), screamed and cried until I nursed her, and then crashed from exhaustion into a deep sleep in the car.

I decided not to disturb her sleep, so I dropped Elliot off at home, and Maya and I continued up to Levindale a bit early. We arrived at Levindale around 12:15, and we had 45 minutes to hang out with Mom before Chanel, the transport driver, arrived. We’ve got a great photo of Dad, Mom & Chanel arriving at Hopkins from the transport to show off. Chanel has been wonderful for us – she shaves nearly 2 hours off of Mom’s waiting time by sitting with us and driving Mom back. Chanel was in GREAT spirits today…she told us all about moving into her new house and how she surprised her children. It sounds like she had an amazing weekend, and I wish there was more we could do for her to repay her for her assistance with Mom.




We arrived at Hopkins early (stopped to take a photo with Chanel – our “photo of the day”). Radiation was on time, and we were in and out quickly. We had to go upstairs to see the doctor, but we were out the door and headed back by 2:45. Chanel waited again, and we were back at Levindale nice and early. We are expecting Chanel to join us for our last day tomorrow, too. I hope we have the chance to see her again one day.

I decided to head back to Levindale with my parents…mostly because Dad and I were hoping for a surprise visitor for Mom. Right around 4:00, she arrived! Donna, my mom’s nurse from Hopkins, stopped by to visit. It was WONDERFUL to see her, and she looked amazing. She brought a beautiful new hat (and some scarves) for Mom, too, and she is looking forward to wearing it. My Mom is developing quite the hat collection. My grandfather, who was a millinery (he owned a hat store), would be so proud! We had a wonderful visit and chat with Donna. My Dad left first, then Donna, and Maya and I left by 5:15. Donna…my one mistake? I forgot to take a picture of you with Mom. So, you’ll have to visit again for that photo opportunity.

It was a good day, and I came home in time for a homemade pizza dinner with the family. Micah again went to bed easily, but Maya struggled. She first fell asleep around 8:30, but woke up again at 9:30…it took us another hour or so to get her to fall back asleep and stay asleep. I’m finding this new pattern frustrating, but we’ll keep trying something new and see if we can get her to bed earlier.

THE FAVOR: Now, for our favor….

So many of you have been there with us through thick and thin, and I’ve been trying to think of ways for everyone to “be there” for this major accomplishment. Of course, I’ll be recording it, and I’ll post the video online, but I was trying to think of other ways for everyone to “hear” Mom ringing that bell when it happens. So I thought I would ask everyone to help us ring that bell by setting an alarm or a bell to ring at 2:15 pm on Tuesday, October 26 (which is about the time we expect Mom to be ringing that bell). Set your alarm clock, or the timer on your oven, or your cell phone, or your watch, or your appointment reminders on Outlook…whatever works for you, but let’s get things chiming all over the place at 2:15 pm so you can ALL “hear” Mom ringing that bell today! And at 2:15, each and every one of you can take a second to think about Mom and listen for that bell. I can’t WAIT!!

Last day of radiation. Ten more days until Mom comes home!